I hope this email finds you well and safe.
Social distancing may be effective but it also causes feelings of isolation. To combat that in the lupus community, LSI has expanded our Individual Peer Support activity. If you are interested in talking with someone in the lupus community through phone or email, please complete the survey at the bottom of the page here. We'll be working on matching people as soon as possible.
HCQ/Plaquenil is still in the headlines. Dr. Jolly was featured on a newscast in Rockford, IL to discuss the problem. (check out the video here) If you are still experiencing issues, here's a link to our advice page or please let me know at mary@Lupusil.org.
We have another COVID-19 and the Lupus Community web meeting scheduled for April 16th. Dr. Jolly will be the featured presenter. registration is required here.
If you have any information that may be helpful to others in the lupus community, please send it to me at firstname.lastname@example.org.
Please contact us with your questions and concerns. We are here to give you reliable, timely information.
Together we'll get through this. Together we make a difference.
Mary Dollear, President, Lupus Society of Illinois
COVID-19 & Lupus Web Meeting with Dr. Rosalind Ramsey Goldman
Updates & Additional Questions since the Web Meeting on 4/2/20
Updated information is the change in CDC recommendations to use a mask. There was more talk about just talking as a way that the virus might spread.
Still the most important things to do are:
- Social (physical distancing)-6 feet rule;
- frequent hand washing;
- also wash high touch areas;
- stay home as much as possible
- Face masks prevent you from spreading the virus especially early on when you might be asymptomatic, but face masks do not prevent you from getting it so please do the important health care measures
Please take care of yourselves: refer to the wellness links provided earlier
This is hard to do, but necessary to take care of ourselves
Q: What are some immediate things we can do or add to our diet to give our immune system an extra boost? (i.e. foods to eat, vitamins to take, fruits to eat.)
A: I am not aware of an immune boosting diet for lupus. However, we recommend a well balanced diet with fruits and vegetables, whole grains, lean protein, and if you don’t eat dairy or green vegetables and avoid the sun you may want to take a vitamin D supplement. Avoid processed foods and limit consumption of sugar sweetened beverages and desserts. I know there are “immune boosting” diets online or recommended by some practitioners. I think if the recommendations are similar to what I stated at the beginning of this paragraph.
Q: Would plasma from recovered patients be more effective than the vaccine for SLE patients?
A: The efficacy of plasma infusions for COVID-19 is experimental. This strategy has been tried for other infections and it does not always work. Therefore, it should be done under supervision either in the hospital or part of a clinical trial. Once we have scientific evidence for how or if to use this treatment, we will be able to provide more specific guidance.
COVID-19 Global Rheumatology Alliance
This registry is for healthcare providers to enter data about their rheumatology patients with COVID-19 infections. It is hosted on the REDCap survey platform at UCSF.